When will it ever get better?

I've been in so much pain and having horrible fatigue for months, it just seems to not get any better. I'm still on the never ending rounds of steroids, which I hate how they make me feel. This is really depressing...how long will this last until I will have some relief? 🙁

I'm also on week 2 of the Plaquenil 200mg daily and Meloxicam 15mg.

Last edited by

8 Replies

  • Please keep going back to your RD nurse. It sounds like the medication you are on is not working and you should not be left so long before trying something else. Steroids are not the answer. They do not treat the disease only the symptoms and should be short term use only. Persist.

  • I hate how long it takes to get some control over this disease with meds. There is no easy way to work out which suits you the best and hospitals have to follow set guidelines in the order of drugs offered together with the long lead time for the drugs to make a difference it does take a long time. I have had RD for around 30 years and generally reasonably controlled over that time but 4 years ago I went through a horrible time and become virtually housebound and struggled to do anything, went through 3 drugs over 18 months which did not work enough but now after a TKR and Abatacept I now have a life again which at the time I thought was going to be impossible. This is my experience but everybody is different and nobody want to be on stronger drugs than is necessary so the gradual build up is necessary and unfortunately they take up to 12 weeks to become effective. Farm

  • Its a hard thing to accept but it varies so much with each person my friend, some meds are so slow burn they can take many weeks and many doses to work but that is why they assess you visually and ask you things as well as monitor your bloods for signs of change. Also remember that sometimes they have to try a drug with other combinations of meds to see if it benefits you. Do remember that due to the cost of many of these meds they wont try them on you longer than necessary.

    Stick with it and im sure the day will come when the right combination is found to help you and you start to reap the benefits.

    Many people give up on a long race only to find that the finish line was over the next hill. Dont give up, keep pushing on. When the benefit comes you will likely be the first to know and your friends out here wiill be waiting to hear about it. Please realise that we ALL need you to win as well.

  • Hugs from UK. I'm so sad for you, having been there 4 months ago the feeling is still fresh in my mind. Nothing helps, no one understands. We on here do though. My advice to you would be use your last energy for fighting and continue going back to the Rheumatologist and your family doctor. I really don't think your arthritis is controlled if you're relying on Steroids (which sounds like they're doing very little btw).

    My Rheumatologist team had almost allowed me to live a miserable existence and I accepted it for 18 months. I did a list of all of the things I used to do and couldn't anymore, I'm 29 and this included walking. I used it to give me amo to say I wasn't taking the pain anymore I was refusing additional diagnosis of fybromyalgia and I wanted help. NOW! FINALLY I have a biologic which gave me my life back. Get a rheumatologist review!! The ppl on here are what kept me going!

    It's so hard when you feel so low, pain, meds, loss of activity are so tough. Be kind to yourself you're a soldier!! There are meds out there that help, me and others on here are proof. Don't accept anything less than your life back ❤️

    Best of luck

    T xxx

  • Hi Twinks80

    I am sorry you are having such a difficult time; there is nothing worse; it's different for all of us as everyone's pain threshold is different. But we would all agree pain is not our friend and it's not the blessing either.

    Sometime it takes a long time to get it under control again; especially if you have a family to look after too as you can't put yourself first. Have you been in touch with RA nurse to tell them how you are doing? They might be able to give you some advice and review your treatment too. I hope you get on top of things soon. Look after yourself you are important too remember x some time we forget this when your a mum .

  • All I can tell you is that it can improve, Last year I was as you describe, in fact for quite a lot of this year too. About 6 weeks ago I started to feel better, stronger and able to maintain gentle activity for longer. Friends tell me I am looking better and I am starting to believe them.

    Stay positive.

    Happiness helps.


  • Oh dear I wish I knew 😞 hubby has RA not me. He last had a course of steroids 2 weeks ago and going downhill ever since 😞 I hate this damn illness for you all xxx

  • It's tough, and with this disease there are no quick results. But they can and do happen, so please don't despair. It took me a long time to get it under control, but eventually and incredibly it happened.

    For most of these drugs it's at least 12 weeks before you start to feel the effects, unless you are very lucky. So 2 weeks isn't likely to change things. But keep in touch with your rheumy team as 200mg is not the top dose, so you could ask about increasing it if you seem to be seeing some positive effects and no negative ones.

You may also like...